Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Monday, November 5, 2012

2Dimensional Love.

Every day Kannon is bombarded with stimuli.
Stimuli used by his therapists and teachers to evoke a response that will hopefully produce a correct response.
Usually it starts out in 2 Dimensional form...as simple as a drawing on a piece of paper.
Then sometimes it moves onto 3D, or used in the real world to see how he responds to the cue given to him.

Ahhhh, the beauty of fundamental ABA therapy.
Discrete Trial Teaching...basically breaking down a task into smaller, more teachable components.
The child is given a "cue" or discriminative stimuli - the child responds - a reward is given for a correct response.

A few years ago Kannon didn't understand the concept of love.
What it really meant.
What it felt like.
I think more than anything he wanted to, I think this desire is what drove him to dig deeper sometimes when he just wanted to stop...
Stop all the hours and hours of therapy...the demands being placed...the constant life work.
I would see him at night hugging his stuffed giraffe.
Holding it to his cheek and looking at it...almost like he was waiting for some sort of response, some sort of reciprocation...something called love.

What he didn't realize is that the whole time he was giving so much love...so much of him wanted to feel it back and understand what it all meant to his heart, and to his brain.
He was truly finding his way within the limitations of his brain.
Damn brain...it seems to never find its way to the heart...or is it vice versa?

As a parent to a child with Autism you learn very early on that you must let go of all pre conceived notions of mile stones, both physical and emotional. You must accept that your child may never reach any of them.
I believe one of the first things I accepted early on was that Kannon may never tell me he loved me...and if he did he may not really understand what it meant.
Would they just be words he muttered out of his training?
Would he be "programmed" to tell me these words before he went to bed since he heard me say them every night to him while he lay there sleeping?
I just didn't know.
I didn't want to set myself up for such heartache....I logically wanted to prepare myself so that I wouldn't feel the sting of it all.

As Kannon's mom I find myself constantly preparing myself for future heart break.
I don't let my heart get ahead of itself.
I don't allow myself to have faith in the process...
And logically why should I?
When you see your child fight so hard day after day just to say their name when asked, how the hell can you expect them to feel love or empathy.....how?

But here's the other side to that wall.
On the other side of it I still pray/prayed every night for Kannon.
I still talk to him while he sits in his bed staring at the ceiling muttering mindless words.
I open my arms to him every morning, hug him and tell him how proud I am to be his mom.
I talk, and talk to him when he sometimes has no response for me.
I still cry to him and tell him how scared I am...how I don't understand what is going on and how much I hope he someday will just look me in the eye and say "I love you."
And not just say it, but feel it...understand it.
It sounds so simple I know.
So simple in such a complex world...in the world of Autism.

It seems ironic looking at it, or thinking about it all now.
My faith in Kannon never stopped.
My faith in HOPE never failed my heart...or my brain...not once.
No matter how hard I trained myself to not feel pain, or disappointment, or fear, it didn't matter.
Even though I was getting through every day content, at peace with it all, my heart never gave up hope for more...for a bigger picture of why it is what I do every single day for Kannon.
To believe that love cannot be taught, nor should it be.
That love is something the heart breaks through to the brain...it fights for the honor of feeling love.

I get asked quite often how it is what I do every day...how I find the strength to carry through some very tough times...
I find moments that matter.
I allow myself to be brought to my knees in times of weakness...and I open my heart and arms and just be human...I just breathe.
I pray...I cry...I laugh at myself a lot...I talk to my son who may never have a meaningful conversation with me.

But here is what I remind myself of every single day...
Just because you don't hear a response doesn't mean they aren't listening...whoever "they" may be.

It doesn't mean your words or faith go away or have no meaning.
And never expect a response that you want...it's blind faith.
It is giving yourself to the situation and letting go of expectations.
It is truly a raw life learning experience.

Kannon's therapist drew a 2D stimuli for him a few months back to prompt a response from him when asked a simple question.

You know what he said when she asked him?


My heart hears you too Kannon.
It really does.
And apparently he was listening all these years...at least his heart was.


1 comment:

  1. "Love is something the heart breaks through to the brain...it fights for the honor of feeling love."-- How very blessed you are to have witnessed the very proof of this in Kannon, Kary. And yet when I think about it,the proof of love is actually YOU with your untiring, relentless love for your little man. You sharing this to the world has allowed us, me to be part of this wondrous blessing and breakthrough. Thank you. Anais Nin said, "The only abnormality is the incapacity to love." Our children may have autism, but our children are stronger than autism. Love is stronger than autism. You chose to believe this and never lose hope. Thank you for reminding us not to lose hope either. Thank you, thank you, thank you.